Saturday, December 10, 2011

Watch Your Mouth

"But mommy, you can't watch your mouth because it is on your face."

This was the answer I got this morning from Maya when I admonished her for calling someone stupid.  I belted out a "watch your mouth" flippantly to remind her how I didn't like it when people call each other stupid (and it also dawned on me at this moment that my mother used to scold me for the same thing, so not only am I  scolding my kid, I am turning into my mother - GREAT).  

Of course Maya's answer made me laugh and we continued on with our morning but  the whole thing reminded me of how often I forget that Maya has a literal mind and she often does not understand things I say because I use sayings, metaphors and er-um, sarcasm to express myself a lot of the time.  

And this leads to a lot of misunderstandings and also truly funny exchanges between us.  Once when fooling around I called her man, like "get off me,  man" to which she retorted, "I'm not a man, I'm a girl."  Other times when she was stalling in the bathroom I asked her if she fell in to which she then explained to me that she was too big to fall in the toilet.  Once I confused her totally when she stayed in the bath too long by telling her she was a prune.  She got angry and told me very distinctly that a prune was a fruit which grew on a tree and that she was a little girl that grew in my belly.  Another time when playing backgammon with Leo I told him I was going to kill him.  Maya exploded in tears and ran to her father and threw her arms around him and she begged me not to kill him.

So, I have learned to try and be careful what I say, not so easy as I am one of the most sarcastic people ever.  

Many people on the autistic spectrum have problems with this and it impacts both their communication skills and social skills.  Temple Grandin and many others says that the fundamental difference (in lay terms) between autistic people and those who are not autistic is that non-autistic people think linguistically while autistic people think in pictures.  

Thankfully when Maya was first diagnosed I looked for books which would help me try and understand her and I ran into Temple Grandin.  

When I read Temple Grandin's Book, Thinking in Pictures for the first time I really felt like someone had turned the lights on with regard to my understanding of my daughter.  Until that time I couldn't figure out why it was so hard for Maya to listen to me, to follow directions why she just didn't answer me when I asked her something most of the time.  After reading her book I started to understand that much of what I say to Maya triggers her visually and the delay is often caused by her mind searching for visual cues within her own brain to understand what is being said.  

When Maya first entered special education, the school used pictographs to help set routines for Maya and it was only then, with those little black and white pictures that daily routines and daily life started getting easier.  We had rows of little velcro strips and loads of pictos to demonstrate the daily routines of what was expected of Maya in the mornings (get up, get dressed, eat breakfast, wash hands and face, brush teeth, off to school), each step represented on a little black laminated card with a picture that cued her into what would happen.  When we started using pictos morning routines and evening routines became easier and we started to move through regular routines without crying, without (too much) stalling and mostly without Leo or I struggling not to lose our tempers.  We started preparing her every day.  If she had to take a bath, we used the bath picto, if she had to take a shower, we used the shower picto.  If she was taking the bus home from school we used the bus picto, if Leo was going to pick her up with used the car and the papa picto and so on.  

Those little pictos saved our lives in the beginning and for a good year we were largely a picto-dependent family.  

We don't use the pictos so much anymore at home as Maya has come to understand our routines and she can move more or less within them as long as we give her enough room and space and don't pressure her.

We always tend to strive for 80% because after all Maya is Maya, a very determined girl who marches to her own drummer, she's never going to get dressed in the mornings without her attention diverting and without a little stalling.  We have learned to maneuver with her and have learned when we need to give her more room and when we need to run a tighter ship.  Most days when the bus shows up she comes to the door, puts her coat on and gets her book bag.  It's not flawless mind you, some days she just has to run upstairs for something but she's a kid, not a train schedule.  And we always try to shoot for most of the time.  I've learned on this journey that most of the time is a good goal.

As much as Maya has a hard time reading cues, there are some that she gets.  This afternoon when coming home from school she relayed a story to me about a boy in her class that she is friends with, a boy called L.  I am not sure what L's diagnosis is but I can see that he is a sweet boy but he has a lot of issues and has a hard time socializing with other kids.  He hardly speaks.  He and Maya pal around quite a bit.  They are rough-and-tumble type of friends.  He chases her and she chases him.  They roll around in the sandbox together and more than one of her t-shirts has the collar all stretched out of shape from him trying to catch her.  Sometimes they are difficult to control together as they kind of egg each other on.  But Maya really likes him and he adores her.  Most days, the little that Maya tells of school is normally about L.  This afternoon Maya was telling me a story about L and how he had a hard time on the bus because he kept taking his socks and shoes off and throwing his socks around the bus and they kept landing on her and it annoyed her a little bit.  So, being the diplomat I asked her if she asked L why he was doing that.  And she answered that "L doesn't talk so good." So, then I asked her if it was difficult for her sometimes with L because he didn't talk, making it hard for her to understand him.  And without missing a beat Maya said, "he doesn't talk but he still says a lot, I understand him fine." 

My 8 year old, with PDD-NOS and difficulty reading cues gets that.

Society needs to catch up to these kids.  

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